Health Vision Media – Right to Hope
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Rare disease-right to hope..
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Category Archives: Activities
Health ministry plans policy for rare diseases’ treatment
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This article from the Hindustan Times comes in mid of desperation from Rare Disease patients and families and as a hope for 2020. The tension is that, the silence for the of Ministry of Health on the announcement of the..
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Inauguration of India’s First Inclusive Living Space by Pompe Foundation and Inclusive In India
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I am happy to share that, For the first time in India we have inaugurated “Inclusive Living Space” for 1) Differently Abled / Persons affected with Rare Diseases who are working / planning to work in Bengaluru and they need..
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Birthday of Mr Vilas Shindhe – Rare Disease Warrior affected with Atexia
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on 15th Dec 2019 we celebrated Birthday of Mr Vilas Shindhe – Rare Disease Warrior affected with Atexia. he is alos first Guest at “Inclusive Living Space”. This is a Joint initiative of Pompe Foundation and Inclusive In India..
Read MoreInteraction with St Joseph evening college students Bengaluru
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Addressed a 150+ students of St Joseph evening college Bengaluru to raise awareness on Rare Diseases and about ORDI works. This is also to create a sensitivity among youths for the UN Human Rights theme for the year 2019 “Youth..
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Pediatric Bio Ethics Symposium 2019
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Participated and was part of Inauguration function in the Pediatric Bio Ethics Symposium-2019 on 1st Dec 2019 for the third year on behalf of ORDI under the leadership of Dr Jagdish Chinnappa -Consultant Pediatric and Child Care, Manipal Hospital and..
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Anand Bazar- Committee for the treatment of rare diseases
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This is the article published in Anand Bazar Patrika in Kolkata This is a good news that, West Bengal Govt has constituted a ” West Bengal State Technical cum Administrative Committee for Rare Diseases. This is a 7 member committee..
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IEM day at Nagpur Organised by MERD India
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I was part of Inauguration and Speaker at ” IEM day” at Nagpur organized by MERD India Foundation, Nelson Mother and Child Care Hospital, and Indian Academy of Pediatrician, National Neonatology Forum and FOGSI, I spoke about ORDI and expectation of..
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The Hindu – ORDI Writes letter to 500 Member of Parliament for requesting Rare Disease Policy
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ORDI has written a letter to 500 Member of Parliament of India and 30 members of Parliamentary Standing committee on Health. Patients group and Patients are in dark about the National Rare Disease policy for Treatment of Rare Diseases. This..
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Public Meeting on People centered Governance for Bio Bank and Genomic Research at St Jhons
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Attended a consultation meeting on behalf of ORDI along with Mr Madhan -CEO organized by “Health and Humanities Division of St John’s Research Institute, a sister organisation of the St John’s Medical College and Hospital”. Who are focused on engaging..
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Are you aware about Rare Disease?
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At ORDI we kicked off Awareness campaign today. Are you aware of hashtag#RareDisease ? An ORDI initiative to create awareness To identify any undiagnosed case still suffering Get it in touch with a Rare disease patient, family ……………… and to..
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Rare Champion of Hope Award 2019 by Global Genes, San Diego, USA
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Rare Champion of Hope Award 2019 by Global Genes, San Diego, USA award acceptance Speech. I have received this award on behalf of 70 million Rare Disease patients and my Daughter Nidhi. ..
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HEALING BEYOND DISEASE : LUNCH & LEARNS @ Amicus Therapeutics -New Jersey
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HEALING BEYOND DISEASE LUNCH & LEARNS: A SERIES TO EDUCATE AND INSPIRE I addressed a employee gathering at : Amicus Therapeutics – New Jersey- USA, We discussed on ORDI global efforts to raise awareness for rare diseases in India. and..
Read MorePatient groups plead for interim assistance for patients with rare diseases
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Patient groups plead for interim assistance for patients with rare diseases NEW DELHI, Aug 27: Concerned over the ‘delay’ in the implementation of a national policy for treatment of rare diseases, patient advocacy groups have appealed to the Union Health..
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Patient groups ask Harsh Vardhan to come up with interim assistance for patients with rare diseases
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Organization for Rare Disease India (ORDI) and Lysosomal Storage Disorder Support Society (LSDSS) have written to Union Health minister Harsh Vardhan asking him to provide an interim assistance till the National Policy Treatment of Rare Diseases (NPTRD) is formulated. New..
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Experts call for action to make National Rare Diseases Policy a reality
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Experts call for action to make National Rare Diseases Policy a reality Represented ORDI in Round table Discussion on Rare Diseases Policy -Deliberating the way forward on 27th July 2019 at India Habitat Centre, New Delhi organized by Health..
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DMD Parents meeting in Kolkotta
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Conducted DMD parents meeting by Dr Ann Mathew, Dr Ilin, dr Dipanjana Dutta . more than 40 Parents attended the meeting...
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RDCCC Inauguration at ICh Chennai
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RDCCC Inauguration at ICh Chennai. Mr Zia..
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Wishbone day – International Awareness day
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Wishbone day – International Awareness day Observed by IOIF to create awareness on osteogenesis Imperfecta iN lalbagh, Mrs Tejaswaini Ananthkumar was Chief Guest...
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